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Insurance injustice


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15 replies to this topic

#1 netta

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Posted 13 February 2008 - 09:29 AM

Hi everyone,
I'm just wondering how many folks have had trouble with their insurance companies refusing to cover stem cell transplants or other necessary treatments. Thanks in advance--all replies most welcome!
netta

#2 jefa

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Posted 13 February 2008 - 09:43 AM

Hello, netta, and welcome to the ISN Sclero Forums. I don't have any personal experience, though I am sure others will join in. Are you a candidate for stem cell transplant?
Warm wishes,
Jefa

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#3 netta

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Posted 13 February 2008 - 11:50 AM

Thanks Jefa for welcoming me. No, I'm not waiting for stem cell treatment myself, but am hoping and that my stepmother will win her appeal so that she can receive treatment. I'm assuming that she's not alone, and I want to hear from other folks who may be appealing their insurance companies, or who have had to raise money themselves for treatment. I think that it is an injustice which is not being addressed in the media or by our politicians, and I hope to "make a noise" about it, as one physician suggested to me recently. The fact that a government agency can offer people hope through clinical trials, allow them to go through all the paperwork and testing in order to qualify, and then turn them down because their insurance company refuses to pay for one of the treatments seems highly unethical to me. And I think that it should be illegal. Anyhow, that's my rant. Does anyone else have opinions or experience with this?
Thanks for listening!
n

#4 emmie

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Posted 13 February 2008 - 07:21 PM

Netta,

Thank goodness I am not a candidate for a stem cell transplant. However, two insurance companies have refused to cover IVIg (immunoglobulin infusions) for me for another autoimmune disease I have. In my area, having them at the hospital and depending on the brand of immunog. it can cost between $8,000.00 to $10,000.00. Between the cost and the fact that the disease it would treat is extremely rare, the insurance companies deem themselves competent to dictate medical care. Grrrr.

Good luck in your quest to "make noise".

emmie

#5 netta

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Posted 14 February 2008 - 12:47 AM

Hi Emmie,
So sorry to hear that you're being denied coverage for immunoglobin treatments. Have you begun the appeal process? Maybe if enough people protest this kind of thing, it will change. Have you seen the Patient Advocate Foundation website? It has good advice about writing appeal letters.

All best luck to you,
netta

#6 PrincessB

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Posted 14 February 2008 - 04:55 AM

Netta,

I guess you're in America? I had a stem cell transplant in France, and I think it was paid for by the people running the trial I took part in and the Social Security. I have to say that the health system here is amazing, but who knows how long it will last as it is apparently deeply in debt.

Good luck!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#7 Peggy

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Posted 14 February 2008 - 05:31 AM

Is it true that if you are on Medicare that the stem cell transplant is then covered and paid for?

I think it's unfair that the insurance companies get to dictate the care over what the doctor deems is necessary. I have been denied two different drugs now by my insurance company. We haven't tried to see if the will cover the IvG therapy so instead she put me on cellcept and that has been covered.

I just went on disability so I am hoping that when I go on Medicare in 2 years that maybe then I would be a candidate for stem cell transplant and it will be covered rather than try to go through my insurance. First of all I am wondering too how you know if you are even a candidate. I have my next apt with my doctor the middle of March and plan on asking her if she thinks I would be a good candidate or not.

Warm hugs from Minnesota.

Peggy

#8 janey

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Posted 14 February 2008 - 07:15 AM

Netta,
Thanks for bringing our attention to the Patient Advocate Foundation Website. What a great website! We have added it to our Disability Resource page. It looks like a very helpful site.

Big Hugs,
Janey Willis
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#9 netta

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Posted 14 February 2008 - 09:35 AM

Hi PrincessB,
Bon Soir! Yes, I should have remembered that this is an international site, and mentioned that the non-coverage is occurring in the USA. How lucky to be in France and not have to worry about paying the 250,000 dollars (170,829 euros) that stem cell transplant costs if your policy refuses to cover SCT. May I ask how you've been since the transplant? And wish you good luck!
netta

#10 PrincessB

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Posted 15 February 2008 - 02:04 AM

Hi Netta,

Wow, that's expensive! They did tell me when I was in isolation in hospital that it costs 800 euros per day without the drugs.

If you do a search for posts by me and look for the ones with Astis Trial in the title, you can read all about my transplant 'journey'.

B x
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#11 Denelle

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Posted 15 February 2008 - 06:06 PM

Hi,

I have some experience with this. Try contacting your local representatives to see if they can help you. Talk to others who have appealed and ask to see their appeal letters. Retain a lawyer to represent your rights. Get statistics. Get letters from your doctors that state that a transplant is in your best interest because ______________ (fill in the blank with whatever is appropriate.) Mostly, don't accept no. Try going to the media in your area to see if they would be interested in covering a story about this. Ask for help from the institution that you are going to for the transplant. I think that is all I can think of right now. But seriously, don't give up. Be a burr in their saddle!!!!

Denelle

#12 peanut

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Posted 15 February 2008 - 10:03 PM

netta,
I was told by the stem cell transplant coordinating nurse that 90% of the time, if not all the time insurances initially reject a claim for stem cell because it's experimental. "Experimental" is a gray phrase with many insurance companies so it really boils down to policy decision makers - sometimes its the insurance and other times its the company itself.

When my initial claim failed to go thru we looked into all kinds of options and pulled out the big guns. We looked into seeing if insurance would match Medicare coverage meaning covering transplant expenses but not the procedure which is about $25k. Sadly it can also be about who you know and if you can get your employer, the Pres of your company or Board of Directors to advocate for your cause.

For me it tested how much I really wanted this and how much fight I have in me. Despite the ups and downs, somehow I feel stronger because I'm learning to endure and fight the good fight for my health, future and family.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#13 netta

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Posted 16 February 2008 - 11:27 PM

Hi Peanut, Denelle & PrincessB,
Thanks so much for writing. I'm already grateful to this list for the help and inspiration it's given--and I've only been here for a few days! The message seems to be to keep fighting. Thanks to this forum and the amazing people here, I'm learning how to do that.
Hang in there,
netta

#14 andrea75

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Posted 01 March 2008 - 06:17 PM

Hi,
My uncle has tried to get it covered twice, and has been denied. I am hoping that he has some luck soon. The doctors in Chicago have said the operation will cost about $100,000.

#15 scragporter

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Posted 02 March 2008 - 10:28 AM

I fought Blue Cross Blue Shield for coverage like peanut who we know well for my wife, it is a very traumatic process. Suffering with scleroderma is bad enough not to say the added burden of fighting insurance companies. We go to Chicago shortly for treatment if you send a private message I will forward a letter on how we achieved it. I do not wish to post as it has personal info included.

#16 KarenL

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Posted 03 March 2008 - 01:46 AM

Hi Netta,

I just went through a YEAR of appeals etc to get approval for flolan. You need to check with your plan administrator and see what the verbiage is on your policy then talk the way they do. Call the actually parent company and see what their appeal process is. Get your doctor to write as well, get ALL of your records and get lots of information that is valid from the internet. (look for sites that are edu. as opposed to dot-coms) Print it all out, make a copy for yourself and one for your doctor, send it to the company.

Prepare for a battle. Prepare for emotional telephone conversations, and the possibly long appeal process. Follow their instruction to the letter. If they say call them, do it, and have a prepared speech written in front of you. many companies require two appeals and an independent review. Don't be discouraged. At the end, when all of my options were used up and they still said no, my doctor tried for four days to talk to an actual doctor at the insurance company. Once he got the right person on the line, they said yes! But it took a lot of blood sweat and tears and as I said a whole year. Get started now, and don't give up.

Best of luck keep us posted.
Karen